Complications

Complications of neurofibromatosis vary, even within the same family. Generally, complications result from tumor growth distorting nerve tissue or pressing on internal organs.

Doctors can't predict whether your disease will progress, but most people with neurofibromatosis experience a mild or moderate form of the disorder, regardless of type.

Neurofibromatosis 1 (NF1) complications

Common complications of NF1 include:

Neurological problems. Learning and thinking (cognitive) difficulties occur in up to 60 percent of NF1 cases and are the most common neurological problem associated with NF1. Uncommon complications associated with NF1 include epilepsy, stroke and buildup of excess fluid in the brain (hydrocephalus).

Concerns with appearance. Visible signs of neurofibromatosis — such as extensive cafe au lait spots, numerous nerve tumors (neurofibromas) in the facial area or large neurofibromas — can cause anxiety and emotional distress, even if they're not medically serious.

Skeletal problems. Some children have abnormally formed bones, which can result in bowing of legs and fractures that sometimes don't heal. NF1 can cause curvature of the spine (scoliosis) that may need bracing or surgery. NF1 is also associated with decreased bone mineral density, which increases your risk of weak bones (osteoporosis).

Visual difficulties. Occasionally in children, a tumor (optic pathway glioma) growing on the nerve leading from the eye to the brain (optic nerve) can cause visual problems.

Increase in neurofibromas. Hormonal changes associated with puberty, pregnancy or menopause may cause an increase in neurofibromas. Most women with NF1 have healthy pregnancies but will likely need monitoring by an obstetrician familiar with NF1, in addition to their NF1 specialists.

Cardiovascular problems. People with NF1 have an increased risk of high blood pressure and, rarely, blood vessel abnormalities.

Cancer. Less than 10 percent of people with NF1 develop cancerous (malignant) tumors. These usually arise from neurofibromas under the skin or plexiform neurofibromas involving multiple nerves.

Monitor neurofibromas vigilantly for any change in appearance, size or number. Changes may indicate cancerous growth. The earlier a malignancy is detected, the better the chances for effective treatment.

People with NF1 also have a higher risk of other forms of cancer, such as breast cancer, leukemia, brain tumors and some types of soft tissue cancer.

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